What do you do if afraid of Remicade ?

[Honey]

Hi there,
It was after suffering side effects of other Meds for Crohns ,that I eventually agreed to infusions. I was on them for about 8 months and was well until I ended up in hospital with a lung infection and had to come off Remicade. I have remained well for a year and a half! Now my Calprotectin tests are very high, over 1000 and have been asked to consider going back to Remicade again. I have been feeling well until today, sore tummy and diarrhoea .
I am upset and would appreciate some positive thoughts from you all about my dilemma! Thank you.
:sign0085:

 

[DJW]

Hi Honey,
That's an awful position to be in. I feel for you.

I'll share a bit from my history.
I was diagnosed before all these advanced treatments. I've had some many serious complication from uncontrolled crohn's that Remicade and any risks were well worth the alternative.

Sending you my support.

 

[Honey]

Hi there thank you for sharing a bit of your experience with me. I am feeling better today but I know that is no indicator. I await results of last test and will see what my consultant has to say. Not easy!!!!

 

[theresad]

It's always such a tough decision. My son got to a place where he is no longer controlled with Imuran - his colonoscopy showed such a mess and I could read the concern on the doctor's face. Even though we were trying to avoid Remicade (and especially avoid the Remicade/Imuran combo) the doctor said we really had no choice. If we don't do something he is going to get an abscess, a fistula, or worse. So like DJW said, is the risk worth the alternative. In our case, even with the risks, the answer is yes, it's worth it.

Our old GI had also helped me by saying we need to make our decision based on what IS actually happening rather not make a decision based on what MIGHT happen. Because a decision against something is still actually a decision. That also helped.

I know that doesn't make it any easier, but sometimes you just have to make your decision based on what your situation is at the time, and accept that the future is not known, and in the hands of a higher power.

 

[Honey]

Hi there and thank you for replying to my dilemma. I was in hospital for three weeks and so ill, that naturally I am afraid. I was told this could happen again. However, I am taking one day at a time and await the repeat test results to see where I am now! Yes you are right, some choices are taken out of your hands because it is necessary to avoid more serious consequences! It helps to share with those who are there on this forum. I hope your son is doing well now. Best wishes.

 

[Caitlin84]

Our old GI had also helped me by saying we need to make our decision based on what IS actually happening rather not make a decision based on what MIGHT happen. Because a decision against something is still actually a decision. That also helped.

I know that doesn't make it any easier, but sometimes you just have to make your decision based on what your situation is at the time, and accept that the future is not known, and in the hands of a higher power.

That is really good advice. I'm going to try really hard to hold on to that when I'm worried about the future. Thank you.